31 January, 2011

me: it's so weird to have this identity that's massively important to me that I feel like someone could just take away
untoward.lady: nods
I have felt like that about my autism for a long time
...
you know something though? A lot of people have told me I'm not autistic or "not really autistic" or some other you're-really-"normal" statements but I have never, EVER been accused of being neurotypical by an autistic person
ever
sometimes those who have power over us, like doctors and "autism moms" and bureacrats and stuff will try to deny us who we are and tell us that we can't belong to our community
but that's why we have a community

30 January, 2011

If you want me to have a crush on you and/or consider you one of my best friends, this is a pretty surefire way to do it. I'll make it easy for you, actually, if I think you're going to be good at it. It goes like this:

"Wait, well, I mean, do you think I'm really disabled?"

And then you list the reasons I am disabled.

My friend Ari does this. He is Up There in my estimation as a result. One time he spent a really long time telling me all about how I'm disabled in different areas. It basically felt the same as if he made me a cake.

Some people will have no idea what this means and will probably take it as some kind of self-hatred. That's cool, you guys, because I actually hate you for having that reaction. These posts are called "from the inside" because they don't concern themselves overmuch with explaining a bunch of context to people who haven't experienced it and can't put two and two together to understand how other people feel.

If you do understand how I feel...well, I don't hate you. And if you want me to opposite-of-hate you, you know how to do it.

29 January, 2011

where it keeps building my hopes up and then, you know, dangling me off of a skyscraper, but never mind.

[note 4/30/11: it's been pointed out on tumblr how incredibly shitty the title/subtitle of this post is. For me to use a stereotype of an abusive relationship to try to make a joke about the DSM is basically to imply that no one who is or was in a REAL abusive relationship, and would not see their life as a joke, is likely to be reading this blog. I'm really sorry.]

Thanks to Sarah posting about it, I realized that a lot of revisions on the DSM-5 website have been updated. This is the ASD page.

I have some trouble with the diagnostic criteria because it's so obsessed with social impairment, and I just really worry that there will be a lot of the same issues with adults getting diagnosed. The way I see things is that a lot of people with autism tend to have a similar kind of history of being socially isolated from childhood to young adulthood, especially at 10-15.* And this is definitely an experience that affects people in a lot of ways and is important and can probably be used pretty effectively to diagnose teenagers and kids. But in my opinion it's not a good idea to say "this is autism" unless you're writing a diagnostic criteria only intended to diagnose very young people.

It's really frustrating that the DSM has again produced a criteria for autism that actually scares me when I read it, because I have to start thinking, "okay, if I need a recent diagnosis ever...where am I going to find someone who can actually do this, who actually knows enough people with autism to have a feel for what it actually is, instead of just going down the list like, 'okay, you can do a normal back and forth conversation, you don't have autism'" (seriously, you just have to miss one social symptom and you're out).

I believe in autism. What a weird thing to say, like it's some kind of ideal--what I mean, though, is that when you look at all these people who have ASD diagnoses, there are a lot of shared experiences and perceptions and impairments. Yes, the diagnosis, and the medical conception, is fucking ridiculous, as evidenced by the fact that so many people who were diagnosed as kids wouldn't be able to be diagnosed as adults, indicating that what was written down as The Disability was just kind of a fairly superficial piece of it--so what professionals mean when they say "autism," I guess I don't think that is real. But I do believe that I am a particular kind of disabled person because I've felt and seen that.

It's just really hard, because I frequently feel like the only people I can trust are other people with autism. I guess a lot of disabled people feel this way, but it's just scary to think about how much professionals don't have our back.

Speaking of being scared, I am, a lot. In fact, I perfectly fit the DSM criteria for Generalized Anxiety Disorder, except for the fact that people with ASD can't be diagnosed with GAD. I looked up the proposed GAD revisions to see if this has been changed, but it's still the same. For a minute I thought that GAD in someone with autism could be diagnosed as Anxiety Disorder Due to a General Medical Condition, but I'm pretty sure this is only applicable to physical illnesses.

This requirement has always baffled me, since, even though a lot of people with ASD do have all the symptoms of GAD, these symptoms aren't actually part of the ASD diagnosis. So my understanding is that if someone with ASD who has all the symptoms of GAD needed accommodations or services due to their anxiety, they would not have a diagnosis that supported those accommodations or services because anxiety is not mentioned in the ASD criteria; and they also wouldn't be able to go get a diagnosis of GAD, since these symptoms are supposed to be somehow covered by ASD.** Even though they're actually not.

So it's like, apparently anxiety is recognized as related enough to ASD that it can't be considered a separate disability, but it's not related enough to actually officially include in the ASD diagnosis? Wow thanks for completely fucking us every which way! That's baller.

If someone tells me I'm misunderstanding how this works--what it means for diagnoses to exclude other diagnoses--I'd be so into that. It's the kind of thing about which I end up feeling sort of sad and sick because it can be so damaging to people in real life. But if I'm right, I'd like to tell you about some other stuff that both isn't in the diagnostic criteria for ASD and isn't allowed to be diagnosed as a separate disorder in someone who's already diagnosed with ASD.

Disorganized speech, if coupled with either catatonia or what are called "negative symptoms" (flat affect, avolition, asociality), is enough for a person to be diagnosed with schizophrenia--as long as the person doesn't use drugs, doesn't have episodes of a mood disorder at the same time, and doesn't have autism. People with autism are only allowed to be schizophrenic if they also have "prominent delusions or hallucinations."

Impairing or distressing thoughts about self-injury are enough for a person to be diagnosed with Non-Suicidal Self Injury or Non-Suicidal Self Injury NOS (the NOS is for people who have done it less than five times in the past year, but regularly think about it) but neither diagnosis can be received if "the behavior [can] be accounted for by another mental or medical disorder (i.e., psychotic disorder, pervasive developmental disorder, mental retardation, Lesch-Nyhan Syndrome)." They've already ruled out the act of self-injuring as part of stimming, so that is not what they mean by saying ASD and ID can "account for" self-injury.

You also can't be diagnosed with social phobia if your symptoms of social phobia are part of the symptoms of your ASD. And no, of course they don't explain what this means. And you can't be diagnosed with hoarding if you hoard things related to your special interest? I'm actually not going to go through the whole DSM website because it's making me depressed. Maybe I'm in a depressed mood, but I don't think I was before. I just have way too much faith in professionals I guess and it's always just like...you know. Skyscraper times.

(*I guess, in the interests of accuracy, I should say that I'm referring to people whose only developmental disability is autism and who tend to grow up with and socialize mostly with non-disabled people. I'm not sure if there's as much isolation for people with autism who also have intellectual disabilities and tend to socialize with other people who have intellectual disabilities--I have a few impressions, but they're not really enough to go on, and it's also not my experience.)

(**Of course I'm aware that some diagnosticians ignore these parts of the DSM, and will diagnose someone with GAD and autism, or whatever, if it makes sense to do so--but I'd rather not have to trust them to know to make that call.)

(Also, one good thing that I noticed is that you can have ADHD and autism now, which wasn't the case before.)

27 January, 2011

So, FWD/Forward ended, which is really bad because my hands don't know how to exist without typing in http://www.disabledfeminists.com to my URL box a million times a day. Sort of as a reaction but also just because it gave us the idea, Julia and I are starting a disability group blog called LOVE-NOS.

The name isn't meant to indicate that only people with mind disabilities are included. We want to practice love not otherwise specified, which basically means that we don't want the blog to be the kind of blog where people feel under a lot of pressure to follow certain rules in order to be allowed there--which sometimes happens in social justice spaces. We'd like people to behave decently and listen to what other people have to say but this doesn't always mean agreeing.

We are just starting out and a lot of what we're thinking about now is just how to do basic things to encourage love-NOS (the feeling) at LOVE-NOS (the blog). In terms of content, I would really like to do some stuff in terms of sharing disability news and promoting writing and art by disabled people; and also just writing about disability in general the way we write on our own blogs, of course. (Although I'm thinking a less personal focus, at least sometimes, than a personal blog.) We really want more contributors and hopefully some of the structure of LOVE-NOS will reveal itself as we learn who is interested in being a contributor, and what their interests and abilities are.

If you would like to be a contributor, you have to identify as disabled or thereabouts and have some ideas for things to post. This is the only requirement, although we're hoping obviously for contributors who have different identities and disabilities from us so the blog can be more accessible and useful to everyone.

Just comment here or there or something or you know how to contact me or...whatever. It's going to be sweet!

!!!!!11111
ETA: it's been 14 hours and no one volunteered, I'm going to start calling on people.

26 January, 2011

1. I can wear clothes that don't match (mismatched patterns, sneakers with a dress, pajamas in the daytime) and people will perceive this as an expression of my style rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.

2. I can go outside with messy hair, messy clothes, or a half-grown beard, and people will perceive this as an expression of my style, or lack of caring, rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.

3. If I am perceived as female and I don't shave, people will perceive this as an expression of my politics, or lack of caring, or gender expression, rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.

4. If I have a "childish" hairstyle (pigtails or braids, very long hair, a big cloud of curly hair) or if I wear clothes with children's cartoons on them, people will perceive this as an expression of my sense of humor, aesthetics, or interests, rather than thinking that I am like a child, or that my parents or guardians want me to be a child.

5. If I dress extremely nicely and formally, I don't feel like this is something I have to do to compensate for my disability.

The initial crime that marks her out and separates her from the Scooby Gang is not so much accidental manslaughter but not displaying a socially normative emotional reaction to a traumatic event...I’m sure the well meant concern and flapping from the Scoobies, and having Buffy’s deeply empathic grief thrust at her pours considerable salt on this alienation. Perhaps if they’d not made a value judgement on Faith’s psyche, she wouldn’t have become what- from that moment- they feared she may well be?

25 January, 2011

being in 9th grade and being cast in this play as a character who didn't exist--the teacher who was directing planned to divide up lines between my character and another character. During vocal warmups every cast member had to say one of their lines and we would all repeat it, but this made me feel awful because I didn't know which lines were mine, because we hadn't gotten to blocking that scene yet. I didn't want to steal someone else's lines. I dreaded warmups so much, because of this one moment, that I tended to skip rehearsals and go to the art room and hang out with Joan. Eventually I got caught, no real harm done; I explained to the teacher several years later, once I could talk to her.

being in 9th grade and always being told my mom to wash my face in the morning and brush my teeth with the electric toothbrush. I didn't wash my face usually--it just happened--I couldn't really explain why I dreaded the sensation of putting water on my face. I just avoided it and felt guilty because I knew it was my fault I didn't have better skin. The electric toothbrush was so loud and full of movement that it filled my head with compulsive horrible thoughts; I usually used it but sometimes I had to turn it off or use a manual toothbrush.

same with toilets (always).

being in 7th grade and having to go to tae kwon do lessons. It started with this ordeal of "conditioning"--running in place, holding weights, while loud music played. It wasn't the exercise, I liked other parts of tae kwon do, but the combination of the movement and the loud music caused all the compulsive horrible thoughts. On the mornings of lesson days, at school, I'd write these little rhyming poems that I could repeat over and over in my head during conditioning to try to keep from having the thoughts. Or I'd memorize certain Yeats poems, which had a good rhythm.

why didn't I tell my teacher to just turn the music off? I guess for other people the music probably helps. It just didn't occur to me that the music was anything other than part of life. Maybe I thought that the compulsive thoughts were part of what conditioning was supposed to be like. It didn't occur to me to say it out loud.

I remember beautiful things like all the time I spent figuring out how to trace words in my head. Like, should I connect the letters? Tracing every word that I thought or heard, like in sixth or seventh grade I think this was. It took time but I had time.

But I also remember that I didn't just tell Mrs. M. that I was upset because I felt like I was stealing other people's lines. Or that I tended to just avoid loud things without thinking and couldn't explain why. And I knew my diagnosis for a lot of these incidents. It's just I didn't know how to talk, or that no one was there to tell me what it meant.

Since I haven't been posting that much I figured a desire to say anything is probably a good one even though this isn't related to disability (on the surface). It's sort of hard to remember being this enraged gay person to whom everything was really cut and dry, and I think some of my beliefs were wrongheaded but I also find them important. I was talking to a friend about high school the other day and I just found myself kind of buried in my old trains of thought.

Brief background (embarrassing to even talk about): I came out as questioning to my parents when I was 10, came out as bisexual when I was 13, came out as gay when I was 16 and that's when the realizations were occurring to me. But this doesn't actually line up with what I was identified as at school. When I started high school I found myself in an environment that was much less aggressive than middle school, but I was still really affected by my experiences being bullied. I was scared very easily and withdrawn from everyone but the friends I made at the very beginning of school; I could speak when I was with them. I really didn't like this about myself and because my school was so small I felt that it would be important for me to be openly queer because I thought it would make queerness more visible and acceptable to people if they knew someone who was queer. So I had a rainbow sticker on my notebook and when I was in ninth grade (when I was 14) a girl asked me if I was gay and I said yes. I didn't identify as gay at the time but I thought it was a simpler way to answer than saying I was bisexual (remember, trouble talking).

Over the course of ninth grade I spent a lot of time with Joan, a girl who wasn't very popular, and we were semi-dating for a little while, but I think that it wouldn't have made a difference even if we hadn't been dating. My school was really small and my admission that I was gay had kind of traveled around, and I found out that kids had discussed the rainbow button on my backpack, and discussed whether I was dating Joan. Joan would get really angry at me for hugging my female friends in public, following her around in an obsessive way, or saying in public that I thought girls were attractive, because she said I was making things worse for her. We stopped "dating" pretty soon for various reasons, but everyone still thought we were dating.

In tenth grade I cut my hair short and started dressing in a boyish way, and had another kind of clingy relationship with a girl (I guess we were technically open about it, but I don't know if people thought of her as being queer; she was very quiet but not unpopular in the same way as Joan). We also went to prom together. I became withdrawn from my friends because I was on Adderall which kind of fucked up my support network for eleventh grade combined with the fact that two of my best friends moved away and my best friend and girlfriend graduated. Our relationship was pretty dumb, and she broke up with me very reasonably at the beginning of the summer, but she did it by telling me she thought she was actually straight, which sent me into a huge spiral of feeling like I was the only person in the world who was queer. For a long time I thought of that summer and the months that followed as being a really defining period in my life, because I was really depressed but channeled it well and officially quit various things (any medication prescribed to me, self-injury, letting myself withdraw or obsess over one person) that had been controlling my life.

On my first day of eleventh grade, Joan and I skipped the morning assembly as we often did to go for a walk. She told me about the training trip for the soccer team that she'd just been on, and told me that most of the people on the team spent a lot of time talking about my supposed relationship with her. It was too bad because I was a lot more clear-headed than I had ever been before, but it was kind of too late to stop this stuff from happening. I also didn't know exactly how bad it was.

~BACKGROUND IS ACTUALLY OVER~

So, there was this girl, let's call her Martha, who was starting at my school as a sophomore. I was assigned to be her mentor who would introduce her to school, and I hung out with her and her friends once that summer. She knew Joan a little because she played soccer, but I didn't really see Martha much once school started. She made a lot of friends immediately, and didn't really make an effort to hang out with me or talk to me. But bizarrely, whenever my mom picked me up from school, Martha would be standing by the car carrying on a friendly conversation with her, and she would also occasionally, out of the blue, be very friendly and familiar with me. She found my livejournal and would comment on it. She also was close with Ms. H., a teacher who was really supportive of me re: queer and disability things, and would visit Ms. H. and talk to her several afternoons a week (which Joan also did).

Martha and my mom kept talking and eventually it was decided that my parents were going to drive me to Martha's house one Friday night after school. Kind of weird since Martha and I didn't really spend time together, but whatever. Because my school was so small (and probably because of the high percentage of kids with learning and emotional disabilities) it was pretty normal for kids to wander into random classes before they started, or even while they were going on, to say hi to teachers and students. So the day I was supposed to go to Martha's house, she wandered into my Latin class and said, "I'm excited for you to come to my house, we have a lot to talk about--something we have in common." She sort of laughed at me affectionately, as she usually did.

So, I'm sure you can guess from the buildup that what Martha told me when I got to her house was that she was gay, that she had been out at her old school, but that during soccer training it became immediately obvious to her from the way people treated Joan that there was no way she could be out at school. She freaked out and confided in Joan, at soccer training. She also came out to a friend in the dorms (she lived at school) who was the person who told her, "everyone always knew Amanda was different and then when they found out she was gay they had something." And one of her other friends immediately realized Martha was gay because she saw that Martha would be friendly to me but only when certain people weren't watching.

I guess I hadn't been--well, I had kind of known, but I hadn't really been sure if I was really The Gay Person At My School or not. But it became obvious from the way Martha talked about talking to me, that it was what defined me and that it was a reason for people not to talk to me. After that night at her house, we became good Internet friends but would barely talk at school, which she'd always pretend I was imagining. I was trying not to obsess over people, and I was starting to get really depressed and obsessive about our friendship, so I kind of detached myself from her. I really, really hated her in a way, even though I also liked talking to her and spending time with her.

I just remember that being gay felt really cold to me then. Like, I associated it with this almost physical sense of coldness, of wanting to drown, of drowning, of picking up things from the sidewalk and having to put them in my pocket because I'd have them, because I needed to have them. I kind of just thought that's what being gay was.

Anyway, I remember realizing, that night and the next day, that my mom of course had known about Martha being gay and had been talking to Martha's mom on the phone a lot about Martha being gay and other issues; that Joan, my only good friend remaining at school, had known Martha was gay; that Ms. H. knew; and that even though Joan and my mom presumably should have some kind of loyalty to me, and they'd known that I was really really isolated and lonely, they hadn't told me that there was another gay person at school, because it wouldn't be fair to Martha to tell.

And it all came down to this thing Martha said to me at her house on the Friday night: "Amanda, if you only knew how many people there are who really want to talk to you and be friends with you, but are just scared to--"

"Really? Like, who?"

"Well, it wouldn't be right to tell you. It's not fair to them."

Gosh, I'm sorry, and I don't know if this is coming out clear, but I remember that at that age I read Lockpick Pornography and I just took it completely straight. And I just remember this feeling that I was being used as a bulletproof vest for Martha and whoever these other people were.

Martha had this secret greatestjournal (I know, we're old, greatestjournal doesn't exist anymore) where she would pour out everything she was feeling about being closeted at school and how hard it was for her. I read it and I cared but I also would see her walking around school with her friends, when I didn't have any friends, and I'd feel like crying that she got to be close to people, and I'd just want her to shut up about her stupid problem of being safe.

Sometimes I just feel like I have nothing in common with people who were closeted in high school, or passed for some reason or another. It's not exactly the same as being radical--that seems like saying queerness is universal when that's the opposite of what I mean. For me, especially when I was in high school or very closely out of high school (a year or two) it just felt like, this is MINE. You can't have it, you can't fuzz it up, you can't make it different, you can't say it belongs to everyone, because I was by myself. I was like a warning.

So if you're going to take me as a warning (I felt) of what not to be like, you don't get to just turn around years later, or when you're alone, and say that you really are like me after all, that we're the same inside. You are NOT like me. We are not the same. Outsides fucking matter.

...Can someone tell me what I'm feeling or what I mean, by spending the last few hours typing this up?

23 January, 2011

I'm getting in a dumb fight on obietalk (my college's anonymous forum). Seriously cis people flipping out about the word cis probably makes me more mad than anything in the world. It just makes me really mad that whoever created the word went out of their way to find this completely neutral term, and people still claim it's an insult.

I really don't like the word neurotypical, I think because people kind of use it without walking the walk (my definition of "walking the walk" would be "not othering people with ASD or setting up people without ASD as an example for us to aspire to"). Just as a random example, ADCN found this, written by a non-ASD woman who has a very passing as ethics slant but refers to herself as neurotypical. But I do get annoyed when I see people react to the word neurotypical in kind of a similar way and automatically categorize it as an insult. I've even occasionally seen straight people who can't handle the word straight because they don't "feel straight."

This just kind of makes me want to barf. It sort of reminds me of Asher's post about tone and how there's always someone who will say that he has an unreasonable or aggressive tone. Someone on obietalk tried to explain to me why they thought "cis" was offensive by saying "what if straight people decided that all gay people should be called faggots?" It just really freaks me out how something totally neutral can be transformed into a slur when it reaches someone who is incredibly offended by the idea that everyone who isn't like them should just be accepted as another kind of person, instead of being an Oh My Gosh You Guys Look At That Weird Thing.

15 January, 2011

cute stories about verbal people with ASD (usually adults) "learning to do things" (such as: flirt! go on a date! go to a party!).

I don't exactly know for sure what it is that bothers me so much, but let me just explore a possible reason, which may be wrongheaded.

The thing is I am probably way biased in being annoyed by this--you know, maybe I have a nonstandard experience in terms of what's hard for me and maybe the only reason I find these stories so stupid is that's not how my ASD is. But on the other hand, I don't know anyone like the people in these stories. If I'm an exception, it seems like exceptions are more numerous than people who follow the rule.

This may be a generational thing, since most of the people I know were diagnosed as kids--so maybe people diagnosed as kids were aware enough of social problems they had or might have had that they picked up on everything they could be taught?--and also most of the people I know are women--so, same thing? So you can take this with a grain of salt, I guess. But I just find myself reading the word "Asperger's" in some cute story or other, and what follows doesn't resemble anyone I know who has an ASD diagnosis.

I know some people, and if you'll just let me do a brief rundown of what verbal people with ASD, of my acquaintance, are like when they socialize:

1. Some people try really hard to respond to everything in a normal/"appropriate" way. Which can be kind of a painful reality to live in, and isn't actually that cute or simple.

2. Some people are themselves and that's okay with them; and maybe the way they think about themselves isn't "am I doing something odd?" so it isn't so much that they mistakenly think they're normal when they're doing weird things, but that they aren't asking the question.

(Obviously there's switching between these two modes, for some people. There's also a ton of variation in which mode actually leads to a certain person being seen as "wrong.")

I just don't really see all these "weird" people who are doing things "wrong," who upon given the right kind of help, or upon deciding to put their nose to the grindstone and "learn how to do things" (what were they doing before, hibernating in a cave?), are totally shocked to discover all the wrong things they've been doing and start doing everything properly and life is better.

A related trope that bothers me is the idea that people with "Asperger's" are like aliens (or humans raised by aliens) coming to earth. The problem with this simile is obvious: an alien has trouble fitting in to earth culture because the alien has actually grown up and lived a whole life in a different culture. So this has a few problematic implications:

1. The alien may be perfectly capable, with time, of learning to do everything just the way people do it on earth.

2. Again, if someone with ASD=alien, and becoming aware that they behave differently=coming to earth, are you saying that this person wasn't a part of the real world for the whole time that they were un-self-consciously different from other people?

More on problematic implication 1, which is really my biggest issue here, because it very much oversimplifies social problems (and erases emotional and functioning problems) faced by people with ASD. If people with "Asperger's" are just normal people who don't know how to act at a party but can be taught, then how is it actually a disability? Just learn how to act at a party, then. In addition to not being a disability, pop culture "Asperger's," when we come down to it...basically requires nothing from other people. If people who are different aren't just naturally innately different, but have just for some reason not learned how to be the same, then there's no reason for society to accept them. Society can give them a little extra time and smile at them fondly while they "learn how to do things," but just being okay with someone who's different and is cheerfully living as different? That's too much to ask.

Am I totally off base? I mean, I think I mostly am, but I also think I have a little bit of something here.

12 January, 2011

On tumblr Josh reblogged a post called how to respect someone with asperger's syndrome. I'm sorry to tell you that at this point in my life I'm so grossed out by the word Asperger's that I actually didn't want to reblog the post just because of this, even though the post was really good. But then I thought maybe I could reblog it because I noticed that Josh had added the following:

I identify as “autistic” or “ASD” now instead of aspergers. They’re both an accurate description but “aspergers” seems so tied up with a stereotyped image of ultra-male brained maths geeks that it is of little use as a way of explaining myself to people.

So I wanted to reblog it and add my own thing to that (although I also agree with what he said) but then I was like, wait I bet my own thing is going to be ultra long and should probably be...

Somewhere Else!

So. I've actually posted about this a ton of times--the whole identifying as Autistic/ASD/having autism, rather than Asperger's, thing--and so has everyone else in the world, but I always find myself having more to say about it. There are two explanations I have used, either separately or together.

1. "Asperger's isn't my only ASD diagnosis and besides, if forced to choose, I think my other diagnosis is more accurate." This is true and it's an explanation I really like because it sounds more straightforward. Except, I happen to know that this is a really weak excuse because I've known about all my diagnoses longer than I've been using the word autism/ASD about myself. So that's not it.

2. Blah blah blah politics. The political explanation is something about wanting to show solidarity across the autism spectrum because those categories are artificial and badly defined, which I totally support of course--but that doesn't explain my intense hatred for the term Asperger's. Like, I actually cringe if someone uses it about me and I don't think any of my friends or even my parents would use it about me at this point.

So is this because autism sounds cooler? Because I want to shock people with a really stigmatized identity? I've definitely seen this accusation leveled against people with AS diagnoses who identify as A/autistic, and this was definitely the reason for my identifying that way when I was fourteen, but yeah I don't think it's true anymore now. So why is this word so important to me--solidarity aside, on a pure individual level of the word I like to use about myself?

Okay, so:

I think there's a certain point of mildness, or invisibility, or lack of certain support needs, at which a person with a disability is kind of existing with a foot in another world. I don't use this term to imply something about people with ASD being from outer space or whatever the line is; especially as I'm not just talking about people with ASD. I'm thinking of people with mobility disabilities who don't use wheelchairs, people who are blind who can sort of see well enough to fake it, and people with ASD who can--well, talk pretty fluently, I guess. I'm not using the word pass because I think there are definitely some people who don't pass and still belong to this category.

What's odd about having this kind of disability experience is that people don't read you as disabled in such an immediate way, and you can kind of fit into images of non-disabled people (even if you don't do it well). And you end up feeling, rightly or wrongly, that disability isn't going to suffuse your life the way it does for those other disabled people. You can just do what everyone else does.

And for some people maybe this is really true, and for some people it becomes clear that it's not. And some people like me will have the heady and crushingly depressing and exhausting experience of having that thing be true and false at the same time. But if you're going through this and there is any misery at all, I think you have to be able to know that there really is life in that other world you have your foot in, the world of what you think of as failure--people who need staff and dogs and letterboards, people who can't hide from it like you can.

You have to know that you haven't escaped. Or even if, like me, you keep kidding yourself that you have escaped--a part of you has to be able to tell you that disability is a piece of something inside.

I know analogy is dangerous, but this all clicked for me with the thought of cerebral palsy, just because I knew a few people who had it and I knew it could mean a lot of different things and look a lot of ways, and some people were in my category of attempted escape. I thought of a person who could walk saying honestly, "I have cerebral palsy," and for some reason this was so beautiful it made my head explode.

For me, saying "I have autism" to people who think of me as normal--to whom Asperger's is this quirky 21st-century meme that is almost just a Myers-Briggs personality type--is a way of saying, parts of me are falling off, parts of me belong to this huge sometimes silent country, no matter how I look I am (genetically and deeply) one of the people who most of the world doesn't want to exist--it's this huge, almost spiritual thing.

It's so weird when people will kindly try to tell you, more or less, that you've escaped and you shouldn't use that word. Because Jesus, so much of what my brain feels and does is so terrible, but having a word for it and having a home is the most beautiful thing.

(this is pretty basic, I'm sort of writing it to use for something else)

Conflict: A disabled person is faced with some kind of task that because of their disability seems impossible, or, if not completely impossible, so incredibly hard and draining that it probably wouldn't be a good idea to take on. This can happen in two ways:

1. The person is expected to complete the task. Other people don't think of the person as disabled; or, people like family and friends are very intent on the idea that while the person may once have been disabled, they are now not disabled anymore. Because of this pressure, the person doesn't feel like it's acceptable for them to say, "I can't do this." If they refuse to complete the task or fail in the attempt to complete it, they will either be seen as a non-disabled person who is lazy and weak, or they will be recognized as disabled, and demoted to the stigmatized category #2 experiences.

2. The person is expected not to complete the task, or no one wants them to complete the task. However, the completion of the task is the only way for the person to get something important to them; in the eyes of other people, the only thing that will make the person qualified for that important thing is the completion of this particular task. (Tell me if this is too abstract, because I can think of a lot of examples but I don't want to lengthen this unnecessarily.) If the person does not attempt the task, or tries and fails, they will have to continue living the life that's expected of them, which they don't want.

Resolution: A lot of disabled people end up doing things that are very very hard for them. Some people fail. And often success can feel just as bad as failure because working so high above your ability level can have effects on your mental or physical health, relationships, and general quality of life.

The Classic Disability Catch-22

Some of the people who do this may happen to refer to themselves as disabled (or as having whatever their particular disability is). They may do this to explain a problem to someone in their life, they may do it just in the process of describing themselves, or they may be identifying as disabled while they are engaging in some kind of self-advocacy or disability rights work.

And when this identification happens, other people often respond, "You're not really disabled, because you completed this task." (Or they admit that you are disabled but they say that you're not disabled enough to count.) Disabled and non-disabled people both engage in this sometimes against disabled people.

I don't necessarily like the idea of saying that certain phrases are always offensive and shouldn't ever be used. I guess I can imagine there probably is one person in the world claiming that certain things are really hard for them when they really aren't. But I find The Classic Disability Catch-22 to be such an extremely hateful and unfair situation--to basically refuse someone their identity or refuse to listen to their experiences as a disabled person, because of "the task" which is frequently making their life unbearable. It's basically like having people deny you your identity because you smashed your finger in a door. Smashing your finger in a door already sucks, guys!

The reason I'm titling these posts this way is that they both are anecdotes that I think are really funny--and in this case, really cute--but I feel like they'd make absolutely zero sense to people who don't have a similar identity and experience to mine, re: disability. So to some people they may come off as being really strange and out of context, but I'm hoping someone from my kind of place will relate to them instinctively.

In terms of socializing, I used to always have a strong feeling that I liked my friends much more than they liked me, so that showing that I liked them was showing weakness and showing that I wasn't normal. I was always really afraid of stalking someone or being an obsessive friend so I thought of myself as having to play this game where I'd be kind of unkind to people or wait to call them until they called me first. Now that I can think about these things more clearly, I think that being nice to people and reaching out to them usually makes them like you; it's not more complicated than that with the people I know. But I still end up feeling some of these urges to withdraw from people because it seems safer and more normal and more dignified. I used to have some food issues and making someone feel like I don't like them, or not calling them, feels basically the same as not eating. I am a winner.

Anyway, the upshot of this post is just that my best Autistic friend and I always use the word "supercrip" to refer to the person who "wins" in any interaction--i.e. the person who hangs up first, is called rather than calling, or displays less emotional connection to what's going on. I just think this is a cool usage because it shows how when you have problems with your disability identity, you can end up relating disability to all your problems and seeing really strange behaviors and accomplishments as "not being disabled anymore," i.e. winning, i.e. being a supercrip.

Someone I used to be really close friends with, and am now out of touch with and really miss, has a visible disability. Last night I dreamed that I was singing with this choir that was meeting in a building where my friend had classes. He had somehow gotten put on some kind of special ed track in college, which I don't think was academically easier or something (or maybe it was in some way more accessible to people with mind disabilities, and I was jealous) but almost everyone in it had a visible disability. So I was sitting there with the choir practicing, and I looked up and saw my friend standing in a doorway with a bunch of people from his classes and this other guy who had a similar gait to my friend walked up to him and hugged him, and then they started talking in American Sign Language. I was just watching them as I was singing thinking how I wished that I knew ASL and was in their classes and their group of friends.

No, my friend is not D/deaf, but apparently my unconscious mind thinks that all disabilities that are more acknowledged by society are kind of the same thing? I just think this dream is hilarious.

09 January, 2011

(This is kind of a messy post, because I started wanting to write it a few days ago and when I don't write things immediately they become disjointed. But I think I'm possibly hitting on some useful stuff.)

Recently Dave Hingsburger wrote a post (which I really liked) about riding a renovated elevator with his partner and a woman with an intellectual disability whom they both knew. The numbering system for the floors of the building had been changed in the renovation, and the woman was confused and scared that the floor she usually got out on had a different number. In his post, D.H. used the incident to discuss different kinds of accessibility--like, people are supposed to understand that, as a wheelchair user, he needs an elevator. But even if people can understand that, or at least accept it when they're told, they can still be unaware (and unsympathetic) when they're creating a barrier for someone with a developmental disability.

Something that I thought was interesting, though, is that D.H. put a disclaimer on the post, apologizing because he hadn't written it carefully and it might be offensive. I'm really unclear on how it could possibly be offensive--because he's calling out his readers who don't accommodate people with DDs when they should? I'm pretty sure that's not it. So I found myself wondering if he was worried that he was making people with intellectual disabilities look bad, or being patronizing, or something, because he was talking about the issue that this woman had.

And, you know, I get that. Being confused about things that other people don't get confused about is one of the most embarrassing things there is. Personally, I have often thought that one train station, or street, is a completely different one. I also misremember times; nothing falls into place for me, things always have to be completely thought through which is something I don't have time for, so: mistakes. And if some new option appears in the middle of a day that I had laid out for myself, I'll do anything to avoid it. It just feels miserable (which has kept me from getting jobs, and so on, because I didn't interview when they first contacted me).

I'd pretty much happily try to keep people in the dark, just because it's frustrating; the moment you realize, for example, that this isn't the train station you thought it was, so what you were saying doesn't make sense, and your friend is waiting for the rest of what you were going to say; everything becomes perfectly clear, so clear that you can't believe you didn't understand it before. So you want those other parts of you to disappear, the parts that existed a minute ago and had everything wrong. You just want the past to drop out of sight so you can move forward like you were never wrong.

The thing is, though, that my instinct feeds something dangerous. The problem with mistakes and slowness and confusion is that they can't necessarily be measured or felt as easily as blindness--and, for that matter, they can't be felt as easily as other aspects of intellectual disability or autism or other disabilities that result in these kinds of small problems. Because they are small problems, and looked at one by one they're not worth worrying about. They're funny. So you got confused about the new elevator. Just laugh at yourself and move on.

The problem is that we have to take stock of small things if we make regular mistakes or are very easily confused. Small things become impossible to laugh at, and even worse because other people don't understand the drain on your time and energy that it takes to recover from so many small things; because other people are just slightly annoyed with you every time.

The problem is that these things seem so embarrassing and stupid that you kind of want to forget they were ever there at all. If it's you, it makes you feel bad about yourself. If it's someone else, maybe you feel that you're airing their dirty laundry. D.H. makes a point of saying that the woman in his post is "bright and competent," as if the events of the post would cause his readers to assume otherwise. Which is probably a reasonable fear because the small things don't even exist in our conscious mind as disability, exactly; at least a lot of people try to understand that you respect someone even if they can't see, can't walk, can't talk--but the small things are still so invisible that they can just completely bias us against someone else or against ourselves, because we see them as an indicator of being inferior in some way.

One of my big issues with disability services at school is that they're completely ignorant of the small things. Accommodations are always about specific things that are agreed on beforehand. There are never accommodations for after you make a mistake (forgetting to show up for an exam, forgetting to turn in a paper that you actually finished). You just have to hope you'll be lucky, because the idea is that people (even disabled people) who work hard and concentrate don't make mistakes. There is no room for that.

I think it is easier, in terms of understanding and accommodation, to be unable to do a particular thing than it is to be able to do it some of the time, or to have it be a lot harder for you than it is for other people but to always be able to do it eventually if you put in the maximum amount of effort and time. Obviously, part of treating disabled people fairly has to be understanding complexities of disability and understanding that it absolutely isn't fair to expect someone to be at the top of their game all the time or working ten times as hard as everyone else--even if they technically can do the same things, with unlimited time, in a vacuum. And I think a really important part of talking about the complexity of mind disabilities is talking about times when people misunderstand things and make mistakes. This is such a timesuck and can make you miserable--and, yes, mistakes seem stupid after, but that doesn't stop the effect of making a ton of them.

But it's really difficult to talk about these kinds of incidents--confusion and fear and mistakes--because we think that they reflect badly on us, you know? Maybe we're immature. We should have done something different. But we really have to talk about them, or there will never be support for people who need it, because a lot of us will always keep making mistakes.

05 January, 2011

You maybe shouldn't look at this post if you have problems with flashing lights etc., because I used gifs from this scene where all the characters are playing with sparklers. Maybe that's a really clueless thing to say, I don't know exactly which kind of images trigger people with seizure disorders and migraines, but I don't want to assume.

But otherwise you should look at it because they're GORGEOUS and I don't care if you have other plans for your life right now. I want to talk about Skins with you.

03 January, 2011

I just want to talk about, well, everything I have to say, using this one scene from Skins.

Basically, JJ (who has ASD and some other stuff) doesn't like the way his friends Cook and Freddie are acting, and they won't listen to his opinions. He can sometimes need a lot of support, and he's not as cool as they are, so they treat him more like a little brother than an equal friend. Then JJ overhears Cook referring to him as a "barmy fucker" and gets even more pissed. He tries to tell Cook how annoyed he is at him and Freddie, but Cook brushes him off as usual.

Cook: Now, are you coming or do I have to keep look out myself when I'm buying gear?
JJ: (softly) Just care, okay?
Cook: About what?
JJ: (suddenly shouting) About me! About me, you twat! You're all fucking twats!
(Cook looks surprised and concerned, and hugs JJ and holds him, stroking his hair. Cook has a tendency to be overly demonstrative and sentimental.)
Cook: I pissing love you, J. Nothing's gonna change that, man. You're my very own little fruit bat. Fuck Freddie. It's just me and you now, J. Feel the love. You feeling it? Right?

What Cook says is really sweet, but there's something that has the potential to ruin its sweetness--Cook calling JJ a fruit bat. We see at multiple points in this episode that JJ really doesn't like Cook to use nicknames or make jokes that are based on JJ's disabilities. In context, it seems obvious that "fruit bat" is a reference to "fruitcake," and therefore fits into the category of names JJ doesn't like to be called. But JJ doesn't say anything. He arguably winces at the word "fruit bat" and doesn't look completely satisfied by anything Cook is saying; but he closes his eyes and seems to enjoy being held.

Now, on some level, this interaction--Cook saying "fruit bat" and JJ not responding--is kind of fucked up. And one thing it reminds me of is something that sometimes happens when you belong to a minority that your friends don't belong to. You end up accepting stuff that offends you, because if you spoke up every time something offended you, your friends would just think you were annoying and be mad at you. This can happen to anyone (I love this post about token black friends)--but it's particularly hard to fight when you depend on your friends for support, or don't think you have the ability to make new friends.

When I look at the scene that way, my smile disappears, as does my desire to write a slash fic. It becomes a really sad scene. JJ seems isolated, marginalized in his own friendship, intimidated out of standing up for himself. I think this is a totally correct way to look at the scene; it's not just an interpretation, it is what's happening.

However, even though I think this is objectively true, it's not the only thing that's objectively true. Cook doesn't realize the effect his language has on JJ and, rather than consciously choosing to ignore something offensive, JJ is probably too emotional to let the word "fruit bat" outweigh everything else Cook is saying. And maybe he has a point. Sometimes people close to us say things that are offensive, and that doesn't make it right--but it doesn't always mean they don't care about us. We have the right to say we're offended; intent doesn't make something okay--but if we choose not to say we're offended, this isn't always a sad thing where we're submitting to the dominant culture, or whatever. I mean technically maybe it is. But you know, also our friend is hugging us. Maybe we "pick our battles." Maybe in our personal lives, sometimes we decide how we feel about intent, and maybe in some moments intent is good enough.

On my school's gossip/general anonymous noodling forum, someone posted an Empathy Quotient test by Simon Baron-Cohen. Like all annoying "quotient" tests by Simon Baron-Cohen, this asks you to strongly or slightly agree or disagree with a number of statements about yourself.

I think first of you know that I'm going to reply to statements like, "I don't tend to find social situations confusing," with, "What kind of social situation are you referring to?" Even the most ridiculous Baron-Cohen stereotype can be pretty un-confused if he hangs out at the comic book store playing D&D. Despite the fact that I am very comfortable in almost every social situation I regularly find myself in, I generally find myself writing down that I do find social situations confusing, because it's such a super broad question and I think I might find the kind of situations Simon Baron-Cohen thinks are real social situations to be confusing? Maybe? I don't know?

Also, this: "If I see a stranger in a group, I think that it is up to them to make an effort to join in." This is an opinion and doesn't have to do with being able to "read" people or sense their feelings.

But never mind. My normal "social skills don't exist" racket is not the motivation for me telling you about the Empathy Quotient. Instead, I'd like to show you some of the other statements that Simon Baron-Cohen thinks are somehow related to socializing and empathy:

I am at my best first thing in the morning.
I would never break a law, no matter how minor.
I live life for today rather than the future.
I like to do things on the spur of the moment.
I can't relax until I have done everything I had planned to do that day.
I often start new hobbies but quickly become bored with them and move on to something else.
I would be too nervous to go on a big roller coaster.
I like to be very organized in day-to-day life and often make lists of the chores I have to do.
I don't like to take risks.
Before making a decision I always weigh up the pros and cons.

I don't think I need to overexplain this. It's poor methods, to say the least.

eta: just kidding, Zoe explained to me why I'm wrong and these are actually the filler questions. I'm kind of relieved SBC isn't exactly 100% as dumb as I thought he was after reading this test.

02 January, 2011

I got baptized this morning which was, you know, swell (can't really talk about it), but one of the priests told my parents and me the best story and I could only really sputter in response because I guess you would have to know me to understand why I found it such a wonderful piece of information.

The priest's daughter (who is hearing) is a first-year in college and just changed her major and life plan. She wanted to teach D/deaf students, but then she took a class on Deaf culture with a Deaf professor and learned that a lot of Deaf people don't think that hearing teachers should teach at schools for the D/deaf. After she learned about this, she changed her mind about wanting to teach D/deaf students, and decided to major in sociology instead of special education.

It was so nice to hear about someone who is so young but is already so ready to take into account what other people feel and have to say. As a disabled person I wish everyone who wanted to contribute to the lives of disabled people was willing to listen to the disabled people they want to help. And as someone who wants to contribute to the lives of people who have disabilities different from mine, I really hope I can live up to the priest's daughter's example and listen to what other people want and need, and accept it when the contribution they want and need from me is for me to not be involved.

PICTURE NOTE: as a lot of us probably know, Photobucket has recently stopped allowing people to hotlink images. For the first few years I was using this blog, I used Photobucket to host most of the images, so now they will not be visible! Until Photobucket goes under, as I imagine it will, you can at least see the images by opening them in a new tab.